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Living with nystagmus: A qualitative study

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To identify aspects of daily living affected by nystagmus. Semistructured interviews were conducted at the University of Leicester, UK with participants with acquired and infantile nystagmus. In total 21, participants were purposively sampled and recruited. Transcript analysis was conducted using constant comparative technique, based upon the grounded theory, to identify specific areas of living affected by nystagmus. Analysis identified six domains that were adversely affected by nystagmus; visual function, restriction of movement, standing out/not fitting in, feelings about the inner self, negativity about the future and relationships. Cosmetic appearance of nystagmus, including others' avoidant response to this, was described (n=18), as was others' failure to recognise what it is like to have nystagmus (n=18). Driving issues were frequently raised (n=19) and restrictions in occupation choice/opportunities (n=17) were highlighted. Reliance on others (n=16) also emerged. Additional to other categories was an overarching and universal distress arising from nystagmus affecting every aspect of everyday life. Interviews revealed universally negative experiences of living with nystagmus that are previously unreported. Findings are similar to studies conducted for strabismus, in particular with respect to cosmetic impact. This study provides the content that is required to develop a nystagmus-specific quality of life tool.
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Living with nystagmus: a qualitative study
Rebecca Jane McLean,
1
Kate C Windridge,
2
Irene Gottlob
1
ABSTRACT
Background/aims To identify aspects of daily living
affected by nystagmus.
Methods Semistructured interviews were conducted at
the University of Leicester, UK with participants with
acquired and infantile nystagmus. In total 21,
participants were purposively sampled and recruited.
Transcript analysis was conducted using constant
comparative technique, based upon the grounded theory,
to identify specific areas of living affected by nystagmus.
Results Analysis identified six domains that were
adversely affected by nystagmus; visual function,
restriction of movement, standing out/not fitting in,
feelings about the inner self, negativity about the future
and relationships. Cosmetic appearance of nystagmus,
including others’ avoidant response to this, was
described (n¼18), as was others’ failure to recognise
what it is like to have nystagmus (n¼18). Driving issues
were frequently raised (n¼19) and restrictions in
occupation choice/opportunities (n¼17) were
highlighted. Reliance on others (n¼16) also emerged.
Additional to other categories was an overarching and
universal distress arising from nystagmus affecting every
aspect of everyday life.
Conclusion Interviews revealed universally negative
experiences of living with nystagmus that are previously
unreported. Findings are similar to studies conducted for
strabismus, in particular with respect to cosmetic
impact. This study provides the content that is required
to develop a nystagmus-specific quality of life tool.
INTRODUCTION
Nystagmus is an involuntary to and fro movement
of the eyes which can be infantile or acquired in
later life due to vestibular or neurological disease
1
and leads to decreased visual acuity.
2
Infantile
nystagmus syndrome (INS) can be unassociated to
any other visual decits or can be associated with
eye disease, such as retinal disease, albinism, low
vision or visual deprivation in early life. Acquired
nystagmus can lead to oscillopsia.
1
Many individ-
uals with nystagmus will adopt an abnormal head
posture to position their eyes where the nystagmus
is least.
3
Recent research estimates the prevalence
of nystagmus to be 24/10 000
4
and the impact of
nystagmus is signicant, with visual functioning
scores in nystagmus worse than other visual disease
such as age-related macular degeneration.
5
Impaired vision has a wide variety of conse-
quences for quality of life (QOL) as various eye
conditions affect vision in different ways. A
combination of visual, functional, psychological,
social and economic factors jointly determines an
individual experience.
6
Vision-specic functioning
measures, such as the National Eye Institute Visual
Function Questionnaire (NEIeVFQ),
7
are reported
to be more sensitive in determining decreased
functional status secondary to vision loss than
general health related QOL measures such as the
SF-36. Furthermore, vision disease-specicQOL
tools (eg, in strabismus) have shown to detect the
impact that an eye condition has on the individual
to a greater degree than do the more generic vision
tools.
89
Strabismus occurs in childhood, as do
some nystagmus forms. It can affect vision, but
more often, it is the cosmetic effects, rather than
visual, of strabismus that have more detrimental
consequences.
10
Further disease specic tools have been developed
for use in visual conditions such as cataract, age-
related macular degeneration, retinal disease and
ocular melanoma.
11
However, there is as yet no nystagmus-specic
QOL tool. US and European regulatory authorities
strongly advocate a move to developing health-
related QOL instruments that are based on
patients, rather than cliniciansperspectives.
12
To
address the gap in understanding the domains of
daily living affected by nystagmus from the
perspective of those with the condition, we
undertook a qualitative study in which we inter-
viewed adult nystagmus patients. The aim was to
identify the aspects of living with nystagmus that
patients perceived as problematic (or the opposite)
in order to understand how nystagmus affects QOL
and, at a later stage, develop a nystagmus specic,
patient derived, QOL instrument.
MATERIALS AND METHODS
Participants
Participants were recruited from the principal
investigatorsneuro-ophthalmology clinic. Patients,
over the age of 16 years, with acquired or infantile
nystagmus were eligible for the study. As the aim of
the study was to identify a wide range of issues
that can impact QOL, a non-statistical, maximum
variation, purposive sampling strategy was adopted
to reduce the chances of omitting to collect infor-
mation that has important implications.
13
This
sampling strategy aims to identify as diverse
a range of views/experiences as possible so that
participant selection is based on the likelihood of
discovering divergent experiences, rather than on
principles (such as sample size calculations),
underpinning the use of inferential statistics. A
sampling frame was therefore drawn up to guide
recruitment (details of patient attributes covered by
the frame are listed in table 1) which ensured as
much variety as possible on a range of characteris-
tics that included age, gender, ethnicity, varying
deprivation scores based on postal code, nystagmus
type, a range of visual acuities, drivers and non-
drivers, parents and non-parents and living
arrangements. This research adhered to the tenets
of the Declaration of Helsinki. Ethical approval was
<Additional materials are
published online only. To view
these files please visit the
journal online (http://bjo.bmj.
com/content/96/7.toc).
1
Department of Ophthalmology,
University of Leicester, RKSCB,
Leicester Royal Infirmary,
Leicester, UK
2
NIHR Research Design Service
(East Midlands), Department of
Health Sciences, University of
Leicester, Leicester, UK
Correspondence to
Rebecca McLean,
Ophthalmology Group,
University of Leicester, RKCSB,
Leicester Royal Infirmary,
Leicester, LE2 7LX, UK;
rjm19@le.ac.uk
Accepted 25 March 2012
Published Online First
19 April 2012
Br J Ophthalmol 2012;96:981e986. doi:10.1136/bjophthalmol-2011-301183 981
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received from the Leicestershire, Northamptonshire and Rutland
Ethics Committees prior to beginning the study and informed
consent was obtained from all participants.
Interviews
Semistructured, individual, face-to-face interviews were
conducted using a topic guide and were audio taped. The open-
ended questions were developed by the authors who have
a range of clinical knowledge and qualitative expertise. Ques-
tions were devised to determine the impact, both good and bad,
that nystagmus has on daily living. A sample topic guide can be
viewed in the online supplementary le. Question responses
were followed by prompts from the interviewer so that issues
that were important to the interviewee could be followed up,
even if they were unanticipated. As RJM was familiar to some of
the participants, a choice of an unknown interviewer was also
offered (KCW). All the interviews were conducted by RJM.
Interviews lasted up to an hour depending upon the individual
participant. Further patients were interviewed until theoretical
saturationwas reached; where concurrent analysis revealed that
additional interviews were giving rise to no issues that had not
already been described by previous participants, meaning that
the search for further new issues was likely to be futile. This is
a team decision based on auditable evidence and is the usual
means of determining sample size in qualitative research.
14
Data analysis
Audio recordings were transcribed verbatim and data analysis
was conducted using a constant comparative approach based on
the grounded theory.
13 14
Analysis proceeded in four steps. First,
the initial four transcripts were open codedby two researchers
(RJM and KCW). This involved intensive line-by-linereection
and summarising of transcript content, to give lists of open
codes (phrases or words), each of which described a unit of
meaning within the transcript. Second, the lists of several
hundred codes were discussed by the researchers and then
provisionally grouped into organising themes/categories, which
provided the initial coding frame. Third, one researcher (RJM)
used NVivo8
15
to systematically assign text from all the tran-
scripts to the coding frame, actively searching for any evidence
that contradicted the emerging coding frame while doing so
(constant comparison). Fourth, the coding frame was continu-
ally discussed and revised as necessary when new or contradic-
tory themes/categories appeared, enabling the coding frame to
develop in a way that accurately reected issues emerging in
participantsaccounts. For instance within the theme that
included negative feelings about the inner selfwere several
subthemes such as low self-esteem and sadness or depression,
but in transcript 9 a new subtheme emerged (guilt) that
required a revision of the coding frame. A second researcher
(KCW) checked the assignment of text to categories as a method
of improving rigour. A clear audit trail was generated within the
software; the process by which the coding frame was derived
from participant accounts is available for inspection by other
researchers.
RESULTS
Participants’ characteristics
Theoretical saturation was reached by 21 participants, at which
recruitment ceased. Two participants had acquired nystagmus
following multiple sclerosis, nine had INS unassociated with
afferent decits and ten participants had INS associated with
other eye diseases which included albinism, achiasmia, achro-
matopsia and congenital cataracts. Table 1 summarises the
characteristics of the sample (more detailed participant charac-
teristics, including nystagmus waveforms, can be found in the
online supplementary le to enable cross-referencing).
Domains of living affected by nystagmus
Analysis revealed six domains of living that were adversely
affected by nystagmus: visual function, restriction of movement
(both physical and social), standing out/not tting in, feelings
about the inner self, negativity with regards to the future and
relationships. Thirty-four subcategories, some of which were
not mutually exclusive, made up the six themes (box 1). The
most important themes are reported as determined by the
frequency in which they appeared in the transcripts. Each area is
illustrated by transcript extracts that gave rise to that particular
category. An additional table is available in the online supple-
mentary data that illustrates the domains that each individual
participant referred to during the interview and the number of
times referred. Although many themes were recounted by the
participants, an overarching theme that every participant
discussed emerged (n¼21), that nystagmus affects every aspect
of everyday life (box 2). Distress was very apparent during the
interviews and 10 participants wept when describing the impact
of nystagmus.
Table 1 Participant demographic data. The lower the
deprivation score, the more deprived the area (based on
Neighbourhood Statistics from the Office for National
Statistics)
Gender
Male 12
Female 9
Ethnicity
White 18
Other 3
Age
<39 years 11
40e59 years 8
>60 years 2
Deprivation score
<10 000 4
10 001e20 000 5
20 001e32 482 10
Unable to score 2
Level of education
University 10
School 11
Type of nystagmus
Acquired 2
Infantile idiopathic 9
Other infantile 10
Visual acuity
Better than 6/12 10
From 6/12 to 6/36 7
Worse than 6/36 4
Family history of nystagmus
Yes 7
No 14
Living arrangements
Alone 5
With others 16
Driving status
Driver 4
Non-driver 16
Stopped driving 1
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Visual function
Participants discussed generalised visual decits due to nystagmus
(n¼15) and also the more specic areas of distance (n¼9) and near
vision (n¼11). Tasks that are specically affected by nystagmus
such as watching the television, reading street signs and reading
text were apparent in the transcripts. Further visual difculties
also arose with facial recognition (n¼12) (table 2).
Restriction of movement
Participants felt constrained both physically (getting from place
to place) and socially because of their nystagmus. Nineteen of
the interviewees discussed being unable to drive and the
restrictions this imposes on travel and also on other areas of
daily living such as occupation. Occupation, in the context of
driving and with regard to life choices and opportunities, arose
frequently in the interviews (n¼17). Public transport was an
area mentioned by many of our participants (n¼15). Leisure
activities (n¼16) and reliance on other people for help with tasks
was also highly reported (n¼16) (table 2).
Standing out/not fitting in
The cosmetic appearance of the nystagmus, and awareness that
othersresponses were avoidant or negative to this, were
signicant to the participants (n¼18). Issues also arose with
regards to head posture. Ten participants reported that
nystagmus impacted upon making eye contact. Thoughts about
being different (n¼10) and direct comparisons to others who do
not have nystagmus (n¼10) suggested that the interviewees
perceived themselves to be less able because of the nystagmus.
The predominant issue within this theme was the failure by
others to recognise what it is like to have nystagmus and the
lack of understanding that exists about the condition (n¼18)
(table 3).
Feelings about inner self and negative future
Nystagmus was reported as affecting an individuals condence
and self-esteem (n¼13). Sadness and distress because of
nystagmus was also expressed (n¼12). Feelings of abandonment,
particularly by the medical community, were recounted by more
than half of those interviewed (n¼12). Feelings of hopelessness
and being told by others that there was no hope emerged
(n¼11). Many participants described giving up and not
attempting activities for fear of failure (n¼8) (table 3).
DISCUSSION
The areas mentioned most frequently were visual function,
driving, others noticing the visible aspects and the failure of
others to recognise what it is like to have nystagmus. Restriction
of movement, which included both physical and social move-
ment was discussed by the majority of our interviewees. Issues
with condence, self-esteem, hopelessness and sadness also
featured.
Although some of the affected areas of daily living that
surfaced in our interviews are typically found in vision-specic
QOL tools such as the NEI-VFQ and IVI (Impact of Visual
Impairment Questionnaire)
16 17
we did also elicit themes that do
not currently appear, further emphasising the need to develop
a tool that is specic to nystagmus. A consequence of nystagmus
is reduced visual acuity; therefore, it was expected that visual
function would materialise during the interviews. This reduc-
tion in visual acuity means that the majority of individuals with
Box 1 Domains and subcategories that emerged from the
transcripts with the total number of interviewees
reporting the topic
Visual function
General visual deficit (15)
Distances (9)
Near (11)
Faces (12)
Focussing (3)
Oscillopsia (3)
Personal preening (6)
Discomfort (7)
Restriction of movement
Driving (19)
Education (10)
Leisure (16)
Occupation (17)
Public transport (15)
Relying on others (16)
New environments (8)
Standing out/not fitting in
Being different (10)
Comparisons to others (10)
Others’ failure to recognise (18)
Others’ perception
Eye contact (10)
Visible aspects/cosmesis (18)
Explaining to others (7)
Feelings about inner self
Confidence and self-esteem (13)
Dwelling on problems (8)
Guilt (5)
Inferiority (7)
Sadness/distress (12)
Negativity regards future
Giving up/not attempting (8)
Abandoned/let down (12)
Hopelessness (11)
Isolation (7)
Relationships
Family (6)
Friends (3)
Education (10)
New encounters (8)
Box 2 Quotes that illustrate the overlying theme ‘affects
every aspect of everyday life’
Overlying themedaffects everything
“It creeps into everything really, everyday life.” (Patient 7)
.it’s all rolled up into one really it’s just there all the while sort
of thing. ” (Patient 4)
.it affects your daily life and it will do for the rest of your life.”
(Patient 16)
.every aspect of growing up and becoming an adult has been
affected by it.” (Patient 13)
“I just want to get on with stuff normally and it not bother me and
it not get in the way of doing what I do every day.” (Patient 1).
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nystagmus have issues around driving and this was also
emphasised within the transcripts.
A key area that was reported by the participants in our study
was the feeling of standing out and/or not tting in. The
cosmetic appearance of the nystagmus was of the utmost
importance because of awareness that othersresponses to this
were avoidant or otherwise negative. Cosmetic effects were
described as affecting the way participants interacted with
others including avoidance of eye contact. The cosmetic effect of
nystagmus is an area not previously examined although similar
ndings have been reported in strabismus where a psychosocial
impact has been established, affecting self-image and interper-
sonal relationships and self-esteem
18
; aspects that were found to
be important for nystagmus. It is possible that when considering
treatment for nystagmus, the cosmetic effects are under-
estimated. Our results imply that assessing efcacy of treat-
ments for nystagmus should not be based just upon visual
function but also upon cosmetic considerations. Recording eye
movement can aid in assessing cosmetic changes and should be
considered an important outcome measure to use in clinical
trials alongside measures of visual function.
Othersfailure to recognise what it is like to have nystagmus
and peoples misunderstanding/lack of knowledge about the
condition is upsetting. Ultimately, this has implications for
relationship-building, personal and professional, a topic that is
also affected by strabismus. Visible strabismus is reported to
negatively inuence the ability to obtain employment
19
and the
capability of nding a partner.
20
Literature suggests that stra-
bismus is still misunderstood by the general population and
has a detrimental inuence on major life goals. If this is the
case for strabismus where the prevalence is 3% to 5% of the
population
21 22
we postulate that the awareness of nystagmus
as a condition, which has a far lower prevalence of 0.24%,
5
is
minimal and has social and psychological consequences for those
with nystagmus. The statement that nystagmus affects
everythingfrequently surfaced during the interviews. This
coupled with the fact that almost half of the participants
(n¼10
i
) wept while being interviewed conrms the importance
of accurately assessing QOL in this group of patients.
The aim of this study, to identify areas of daily living that are
affected by nystagmus from the perspective of individuals who
have the condition, is considered to be best addressed by quali-
tative methods.
12
However, this approach may have some
limitations. Therefore, every effort was made to ensure that
Table 2 Quotes that illustrate the domains visual function and restriction of movement
Visual function
General visual function “Er vision, I’d say it’s poor cos I know it could be better and like I said before you cant get away from your vision so its there all the
time.” (Patient 7)
“Just trying to I suppose if you know if I wanted to read for a long time I mean I’ve never sat down and really read books. But that is
probably why I don’t because you just get tired just reading, concentrating to read for so long.” (Patient 15)
“My Vision.obviously my distance vision is not great, what I would normally be able to read is not great. Also reading small print on
sort of telephone directories and things.if theres poor light quality or if I’m tired then I am then having to resort to using a magnifying
glass.” (Patient 21)
Face recognition “I remember when I was a kid I got lost quite easily because I couldnt find, if I wandered off and then my mum would disappear and
I couldn’t find her cos I can’t pick faces out in a crowds so yeah that was sometimes a problem definitely.” (Patient 1)
.my recognising people; theres many time I walk past people and then they obviously comment you didn’t acknowledge them. Other
times I can acknowledge somebody and it’s not the person I thought it was when then that can be embarrassing.” (Patient 10)
“I’ve always found that I feel a bit anti-social not being able to recognise people when you’re going out and that.” (Patient 16)
Restriction of movement
Driving “For me it’s not being able to drive that’s the main that’s the main issue. But I don’t if I could just get my eyesight just so I could
drive and I would be happy I feel I suppose.” (Patient 7)
“Other things that worry me about becoming a parentdnot being able to drive. I’d have to structure my life quite differently, choose
where I live but essentially just things I need to be close to, rely on public transport which I really hate. And rely on other people a bit
too much as well.” (Patient 13)
“Erm it has restricted in what I can do for a erm for a living. Because I can’t get a driving licence so therefore it restricts erm it has
restricted me quite a lot in the past and it’s still doing so. In the fact that I can’t become any higher in the job I am at the moment erm
because I can’t drive.” (Patient 14)
Public transport “You have to think whenever you’re going anywhere because you have to make sure you can read the bus numbers. The same with train
time boards, you have to think about it, no matter what you do, wherever you go, you have to think about it.” (Patient 1)
.it didn’t restrict the type of job but it restricted where I worked because I was limited to public transport.” (Patient 5)
Occupation .I wanted to join the Navy, I wanted to join the police.the jobs that I wanted to do required that you had a certain level of vision.
Job wise it has held me back.” (Patient 15)
“Erm into working life because no driving license severely restricted the sort of work I could do. You know had I not had this thing wrong
with me we may have lived somewhere else and I may have done a different job.” (Patient 12)
Leisure activities “You just can’t see what’s going on. Anything like that with a ball or a fast moving object forget it, you are not going to be able to see it.
Any sporting event really and going to the theatre, everything really, you just can’t see what’s going on.” (Patient 6)
“Pretty much anything to do with eye co-ordination, football, tennis or anything like that. You’re just not as god as anybody else and it’s
obvious.” (Patient 19)
“Leisure tended to be things that I could do on my own where it didn’t involve other people having to tolerate my ball game
skills.” (Patient 12)
Relying on others “Big problem, big problem not only because you can’t get anywhere because public transport by and large is rubbish and it’s hugely
expensive, but also feelings of self-worth and not being able to drive I just and being reliant on my wife to ferry me anywhere it just
feels hideous.” (Patient 2)
“Erm every day I mean cos I can’t read of projectors and stuff like that. I know it feels makes you feel kind of dependent on someone
taking notes for me and stuff.kinda helpless in a way and dependent on others and I don’t like that.” (Patient 18)
“Lack of independence and I don’t just mean getting around I mean being dependant on other people. I find this very frustrating because
when I’ve studied up to degree level I’m not a stupid person but yet you’re made to feel a bit stupid because you can’t do simple
things.” (Patient 21)
i
*Participants 1,4,6,8,10,11,13,14,15 & 21 wept while being interviewed. These
participants had a range of visual functioning and nystagmus characteristics as
documented in the online supplementary file of participant characteristics.
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participants were not asked leading questions. Transcripts were
examined thoroughly by more than one member of the research
team and regular meetings were held with experienced qualita-
tive researchers to discuss developing themes. As this is the rst
study for nystagmus, there is no existing research to compare
our ndings with. However, our ndings are similar to those
reported for QOL strabismus studies (which like nystagmus
affects vision/cosmesis and can occur in childhood) allowing us
to make comparisons.
A number of studies are available that report treatment
options for nystagmus.
23
One randomised controlled trial reports
that gabapentin and memantine signicantly reduce INS and
improve vision as compared with placebo.
24
However, visual and
social functioning questionnaires that were administered showed
no signicant differences between active treatment groups and
placebo. A possibility is that the vision specic QOL instruments
used are not sensitive to the domains of living that are affected by
nystagmus. Our study has uncovered a number of themes that
are affected by nystagmus, for example, cosmesis, social restric-
tions and psychological distress, that to date have not been
considered when describing the impact of nystagmus and eval-
uating treatments. Although poor visual acuity would directly
contribute to the impacted domains of living raised by our
interviewees such as visual function and restriction of move-
ment, our interviews clearly show the need to consider much
more than poor visual acuity when investigating nystagmus. The
six domains that emerged provide the necessary evidence to
develop a patient-derived, disease-specic, QOL tool for
nystagmus, allowing questionnaire items to be written that are
grounded in the perspectives of individuals with nystagmus.
Acknowledgements The authors would like to acknowledge Elizabeth Ockleford
and Frank Proudlock for their contribution.
Contributors All authors contributed substantially to this article.
Funding This study was supported by Fight for Sight and Nystagmus Network UK.
Competing interests None.
Table 3 Quotes that illustrate the domains standing out/not fitting in, feelings about inner self and negative future
Standing out/not fitting in
Visible aspects/cosmesis “..the wobble, if that were removed or reduced it would make a massive difference. I’m often in situations where nobody need know
or would know that I am visual impaired at all were it not for my nystagmus. But because it’s there it makes a massive difference.
To me emotionally, psychologically it makes a massive difference.” (Patient 6)
“Probably the fact that my eyes are wobbling cos I don’t know any different to what I should be seeing because that’s how
was born. So if you know your eyes and head are wobbling and people are looking at you thinking why the bloody hell’s your head
wobbling then it’s harder to accept.” (Patient 3).
.you would have to sit with your head sort of like on a slant you know to try and get your vision and then people look at you
so you feel a bit conscious there. So you’d find yourself straightening your head up and probably not being able to see erm very
well but you’d just put up with it because you didn’t want people to think you were weird or anything.” (Patient 5)
Eye contact .what’s that with your eyes why are they moving ...I don’t tend to look at people in the eye or if I do it’s sort of fleeting. Cos
I still feel embarrassed about them seeing my eyes moving and thinking what what’s she doing.” (Patient 11)
.when it’s pointed out to you time after time after time after time it does get to you.I actually avoid looking at people straight
in the eye.” (Patient 14)
Comparisons to others “Just feeling different all the time. Just struggling to do things that everyone else can do straight the way. You always you always
just feel that you’re not as good as other people.” (Patient 3)
.going to University it became more of a tiredness thing that was an issue rather than as a vision problem. Erm just not being
able to fit in as much in a day as everyone else and then at work that is the main problem tiredness and how I have to work a
shorter day and can’t fit in as much in the evenings and stuff.” (Patient 13)
Others failure to recognise “And it’s frustrating because just every now and again there’s a little boy in me just pleads I want someone to understand
me and I’d like to somebody actually understand how bad I’m feeling about it and because people can’t, they can’t
appreciate.” (Patient 2)
.it’s more people’s misunderstanding of the problem that is upsetting. It’s not direct problems I face, it’s trying to make other
people understand those problems.” (Patient 13)
Feelings about inner self
Confidence and self-esteem “I’d be a lot more confident, more outgoing and have a different career.I think things would change significantly if I didn’t have
this condition”. (Patient 20)
“I feel that if I didn’t have it I’d probably have a greater more confidence and I’d be able to live in a better way” (Patient 8)
“Again feeling of self-worth is involved here.huge problem with self-esteem, huge problem with not being able to bring in much
money and a huge problem just trying to get through.” (Patient 2)
Sadness/distress “Depressed sometimes. Very depressed. You keep saying to yourself, oh make an effort, but you don’t, you just don’t.” (Patient 4)
“I used to feel ugly because people were so cruel at school cos children are and that sort of sticks with you throughout your life.
Sometimes I feel a bit worthless, as though you’re a nobody cos I’m a bit freaky and different.” (Patient 5)
“There was a time where it actually occurred to me that I should feel suicidal about it because it felt like it was difficult just to go
through the day and put up with this.” (Patient 2)
Negative future
Abandoned/let down “Go away and forget about it yourself and that’s basically what I’ve been told all my life by the professionals.it’s always been
a case of well what do you expect us to do? It’s nystagmus there’s nothing we can do about it. So perhaps they could be a little
a bit more sympathetic and at least pretend to be doing something.” (Patient 16)
“I went for forty years and nobody touched me, nobody discussed it and yet it’s on my medical records and yet nobody was out
there for me. So there was no help.” (Patient 9)
Hopelessness “I was told that there was nothing available at all. There was never gonna be any treatment.” (Patient 3)
“I had an optician who when I was about 10 said to me.well young fellow someone has got to tell you and it might as well be
me.you’ll never have a driving license.” (Patient 12)
“I think the medical profession in general because it’s been over 40 years and I was never told anything, I had no hope.” (Patient 9)
Giving up/not attempting “Or playing sports you know your not going to hit it so why attempt playing cricket cos you could be stood there all day trying to hit
the ball and you know your not gonna hit it cos your not gonna see it.” (Patient 7)
“Erm, cos I don’t want to show myself up. Cos the first thing I’ll say is I can’t read it or I’ll try and read it and get it wrong. And then
they mock you because you’ve got it wrong. And then I then feel belittled that I couldn’t see it and yet at the end of the day it’s not my
fault you know but.” (Patient 9)
Br J Ophthalmol 2012;96:981e986. doi:10.1136/bjophthalmol-2011-301183 985
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Patient consent Obtained.
Ethics approval Ethics approval was provided by Leicestershire, Northamptonshire
and Rutland Ethics Committees.
Provenance and peer review Not commissioned; externally peer reviewed.
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2012 2012 96: 981-986 originally published online April 19,Br J Ophthalmol
Rebecca Jane McLean, Kate C Windridge and Irene Gottlob
Living with nystagmus: a qualitative study
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... Nystagmus is an involuntary movement of the eyes, which can be infantile or acquired. Typically, nystagmus leads to reduced vision (Abadi & Bjerre 2002) and other negative experiences that impact quality of life (McLean, Windridge & Gottlob 2012). Bjerre et al. (2018) highlighted the need for more standardised and accessible information about nystagmus to be available to patients, families and clinicians. ...
... This finding highlights the importance of considering the different ways nystagmus can affect a person and not just their vision. This has also been reported by McLean, Windridge & Gottlob (2012) in their qualitative study exploring patient perceptions of living with nystagmus. Physical and social restrictions of movement, standing out and not fitting in, negative feelings about one's inner self, and negativity about the future and relationships were all reported to occur in nystagmus, in addition to poor vision. ...
Article
Full-text available
Introduction: In response to the need for easily accessible, high-quality information about nystagmus, the Nystagmus Information Pack was created and made freely available online in 2017. This study was undertaken to evaluate the content and accessibility of the Nystagmus Information Pack. Methods: Clinicians, eye clinic liaison officers (ECLOs), teachers, patients, families, and any person with an interest in nystagmus were invited to complete an online questionnaire about the content and accessibility of the Nystagmus Information Pack. Results: One hundred and sixty respondents completed the questionnaire. Respondents who had previously accessed the Nystagmus Information Pack (n = 49, 30.6%) reported the content was appropriate (86%), of sufficient detail (94%), and easy to understand (88%). Minor suggestions were made to improve the content. Respondents who had not accessed the Nystagmus Information Pack (n = 111, 69.4%) reported not being aware of the resource (90%) but had already accessed nystagmus information from a wide range of sources. Poor vision was a barrier to accessing the resource for a small number of respondents (4.5%). Conclusion: Some improvements to the content and accessibility of the Nystagmus Information Pack should be considered, in particular the format options in which it is available, to enable access in preferred formats and with poor vision. The availability of the Nystagmus Information Pack should be promoted and shared more widely, as the majority of respondents were unaware of the resource despite having an association with or interest in nystagmus.
... To date, several studies have evaluated visual function in INS with respect to real-life activities including driving using questionnaires. 32,33 McLean et al. 32 reported that 19 of the 21 interviewees with nystagmus had difficulties with driving, and they discussed that the reduction in visual acuity in nystagmus may account for the difficulties of driving. Das and coworkers 33 found that nearly half of their participants with INS (17/35) met the driving standard of a visual acuity of 0.3 logMAR in the UK. ...
... To date, several studies have evaluated visual function in INS with respect to real-life activities including driving using questionnaires. 32,33 McLean et al. 32 reported that 19 of the 21 interviewees with nystagmus had difficulties with driving, and they discussed that the reduction in visual acuity in nystagmus may account for the difficulties of driving. Das and coworkers 33 found that nearly half of their participants with INS (17/35) met the driving standard of a visual acuity of 0.3 logMAR in the UK. ...
Article
Full-text available
Purpose: Research on infantile nystagmus syndrome (INS) and velocity discrimination is limited, and no research has examined velocity discrimination in subjects with INS at their null position and away from it. This study aims to investigate how individuals with INS perform, compared with controls, when carrying out velocity discrimination tasks. Particularly, the study aims to assess how the null position affects their performance. Methods: INS subjects (N = 21, mean age 24 years; age range, 15-34 years) and controls (N = 16, mean age 26 years; age range, 22-39 years) performed horizontal and vertical velocity discrimination tasks at two gaze positions. Eighteen INS subjects were classified as idiopathic INS and three had associated visual disorders (two had oculocutaneous albinism, and one had congenital cataract). For INS subjects, testing was done at the null position and 15° away from it. If there was no null, testing was done at primary gaze position and 15° away from primary. For controls, testing was done at primary gaze position and 20° away from primary. Horizontal and vertical velocity discrimination thresholds were determined and analyzed. Results: INS subjects showed significantly higher horizontal and vertical velocity discrimination thresholds compared with controls at both gaze positions (P < 0.001). Horizontal thresholds for INS subjects were elevated more than vertical thresholds (P < 0.0001) for INS subjects but not for controls. Within the INS group, 12 INS subjects who had an identified null position showed significantly lower horizontal and vertical thresholds at the null than at 15° away from it (P < 0.05). Conclusions: Velocity discrimination was impaired in INS subjects, with better performance at the null. These findings could assist in understanding how INS affects the daily activities of patients in tasks involving moving objects, and aid in developing new clinical visual function assessments for INS.
... These additional challenges faced by individuals with nystagmus during the COVID-19 pandemic could have had many differing root causes. McLean et al. published a paper regarding living with nystagmus and stated that not fitting in and cosmetic appearance of nystagmus were two of six domains that were adversely affected by nystagmus [8]. In the case of COVID-19, where much more has moved online, these issues could be more profound and obvious on a computer screen, leading individuals with nystagmus to struggle more. ...
Article
Full-text available
Purpose Nystagmus is a disorder characterized by uncontrolled, rhythmic oscillations of the eyes. It often causes reduced visual function beyond reduced visual acuity alone. There is a paucity of literature regarding the public understanding of nystagmus, and there are no published data on the impact of the COVID-19 pandemic on people living with the condition. This study explores the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examines both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers. Methods A qualitative questionnaire was designed following a stakeholder engagement process. This questionnaire was advertised via social media platforms and charity websites to achieve widespread recruitment. Data were collected between November and December 2020. Participants were divided into two groups based on their response to the question: “Do you, or anyone you know well, have nystagmus?”. Questions were posed to participants in a purpose-built, branching survey. The resulting data were analyzed using descriptive and inferential statistical methods. Results One thousand six hundred forty-five respondents were recruited, of which 849 (51.6%) answered “Yes” to the initial filtering question. Analysis showed that, broadly, public understanding of nystagmus differs from the perception of it by those with nystagmus and their carers, that the COVID-19 pandemic has had a significant impact on those with nystagmus, and that respondents who have met someone with nystagmus, even briefly, tend to have a greater understanding of the impact of the condition. Conclusion This study highlights the lack of public awareness regarding nystagmus and suggests opportunities to increase the awareness of nystagmus without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.
... Compared to static visual acuity, motion perception can be examined to assess the real-life visual function of INS more thoroughly. Questions related to visual motion perception can also be added to the current quality of life surveys [49][50][51][52] to better assess reallife related visual function in INS. ...
Article
Full-text available
Purpose: Research on infantile nystagmus syndrome (INS) and motion perception is limited. We investigated how individuals with INS perform coherent motion tasks. Particularly, we assessed how the null position affects their performance. Methods: Subjects with INS and controls identified the direction of coherent motion stimuli (22 subjects with INS and 13 controls) in a two-alternative forced-choice design. For subjects with INS, testing was done at the null position and 15 degrees away from it. If there was no null, testing was done at primary gaze position and 15 degrees away from primary. For controls, testing was done at primary gaze position and 20 degrees away from primary. Horizontal and vertical motion coherence thresholds were determined. Results: Subjects with INS showed significantly higher horizontal and vertical motion coherence thresholds compared with controls at both gaze positions (P < 0.001). Within the INS group, for 12 subjects with INS who had an identified null position, no differences in coherence thresholds were found between their null and 15 degrees away from it (P > 0.05). Conclusions: Coherent motion perception was impaired in subjects with INS. The null position did not significantly influence motion coherence thresholds for either horizontal or vertical motion.
... Infantile nystagmus (IN) refers to bilateral, involuntary oscillating eye movements with an onset in the first 6 months of life. It is associated with suboptimal vision and affects the quality of life (for example driving difficulties, reliance on others and restricted career opportunities) (McLean et al., 2012). Clinical treatments for IN are missing, despite a significant prevalence of 1.4 per 1000 (Sarvananthan et al., 2009). ...
Article
Full-text available
Current treatments for infantile nystagmus (IN), focused on dampening the oscillating eye movements, yield little to no improvement in visual functioning. It makes sense, however, to treat the visual impairments associated with IN with tailored sensory training. Recently, we developed such a training, targeting visual crowding as an important bottleneck in visual functioning with an eye-movement engaging letter discrimination task. This training improved visual performance of children with IN, but most children had not reached plateau performance after 10 supervised training sessions (3,500 trials). Here, we evaluate the effects of prolonged perceptual learning (14,000 trials) in 7-18-year-old children with IN and test the feasibility of tablet-based, at-home intervention. Results demonstrate that prolonged home-based perceptual training results in stable, long lasting visual acuity improvements at distance and near, with remarkably good transfer to reading and even stereopsis. Improvements on self-reported functional vision scores underline the clinical relevance of perceptual learning with e-health apps for individuals with IN.
... Apart from decreased visual functioning, nystagmus can have a significant psychological and social impact [11]. Affected children may need educational support or low vision aids from a young age, and nystagmus can also influence their career choice. ...
Article
Full-text available
Introduction Infantile nystagmus syndrome (INS) consists of involuntary oscillation of the eyes, that usually develop within the first months of life. INS can be idiopathic or associated with albinism, retinal dystrophies, low vision, or it can be part of syndromes and neurological disorders. Due to the variety of etiologies and clinical presentations, clinicians often face challenges in the diagnostic workup of INS, and patients often undergo numerous investigations. Areas covered This review will address approaches to improve the diagnosis of children with INS, and provide the best clinical care and future opportunities for affected children. We will discuss updates on clinical assessment, laboratory investigations, and strategies to advance the diagnosis and monitoring of INS using advanced ophthalmic imaging, diagnostic equipment, and genetic testing. Expert opinion Recent advances in pediatric retinal imaging, by means of handheld optical coherence tomography, provide detailed assessment of foveal structure in several pediatric eye conditions associated with nystagmus, and it can be used to determine the ocular abnormalities of infantile nystagmus. Additionally, the identification of new genes has greatly enhanced our understanding of INS and facilitate early diagnosis and management.
Article
Full-text available
Introduction Infantile nystagmus syndrome (INS) is the most common nystagmus type in children, and can be idiopathic or associated with ocular, neurologic, and systemic disease. Current treatment options for INS aim to optimize vision by reducing the intensity of nystagmus and correcting anomalous head postures and associated strabismus. A PubMed search of all articles published from January 1980 to July 2021 on the management of INS was performed. Areas covered This review will address the principles of nystagmus management, including optical, pharmacological and surgical options. Pharmacological treatments, such as gabapentin and memantine, are now being implemented in clinical practice. In patients with obvious torticollis, eye muscle surgery aims to shift the nystagmus null zone into the primary position. Expert opinion Successful management of INS depends on accurate diagnosis and identification of patient needs and concerns. Recent advances in pediatric retinal imaging and the identification of new genes have refined our understanding of INS subtypes, facilitate early diagnosis and allow for individualized management. Due to the lack of randomized controlled trials, there is still no consensus on a clinical pathway for INS; however, there are several therapeutic options, which can result in improved vision and amelioration of anomalous head postures.
Article
Purpose Conventional static visual acuity testing profoundly underestimates the impact of infantile nystagmus on functional vision. The slow-to-see phenomenon explains why many patients with nystagmus perform well in non-time restricted acuity tests but experience difficulty in certain situations. This is often observed by parents when their child struggles to recognise familiar faces in crowded scenes. A test measuring more than visual acuity could permit a more real-world assessment of visual impact and provide a robust outcome measure for clinical trials. Methods Children with nystagmus and, age and acuity matched controls attending Southampton General Hospital were recruited for two tasks. In the first, eye-tracking measured the time participants spent looking at an image of their mother when alongside a stranger, this was then repeated with a sine grating and a homogenous grey box. Next, a tablet-based app was developed where participants had to find and press either their mother or a target face from up to 16 faces. Here, response time was measured. The tablet task was refined over multiple iterations. Results In the eye-tracking task, controls spent significantly longer looking at their mother and the grating (P<0.05). Interestingly, children with nystagmus looked significantly longer at the grating (P<0.05) but not their mother (P>0.05). This confirmed a facial target was key to further development. The tablet-based task demonstrated that children with nystagmus take significantly longer to identify the target; this was most pronounced using a 3-minute test with 12-face displays. Conclusion This study has shown a facial target is key to identifying the time-to-see deficit in infantile nystagmus and provides the basis for an outcome measure for use in clinical treatment trials.
Article
Purpose Oscillopsia is a debilitating symptom resulting from involuntary eye movement most commonly associated with acquired nystagmus. Investigating and documenting the effects of oscillopsia severity on visual acuity (VA) is challenging. This paper aims to further understanding of the effects of oscillopsia using a virtual reality simulation. Methods Fifteen right-beat horizontal nystagmus waveforms, with different amplitude (1°, 3°, 5°, 8° and 11°) and frequency (1.25 Hz, 2.5 Hz and 5 Hz) combinations, were produced and imported into virtual reality to simulate different severities of oscillopsia. Fifty participants without ocular pathology were recruited to read logMAR charts in virtual reality under stationary conditions (no oscillopsia) and subsequently while experiencing simulated oscillopsia. The change in VA (logMAR) was calculated for each oscillopsia simulation (logMAR VA with oscillopsia – logMAR VA with no oscillopsia), removing the influence of different baseline VAs between participants. A one-tailed paired t-test was used to assess statistical significance in the worsening in VA caused by the oscillopsia simulations. Results VA worsened with each incremental increase in simulated oscillopsia intensity (frequency x amplitude), either by increasing frequency or amplitude, with the exception of statistically insignificant changes at lower intensity simulations. Theoretical understanding predicted a linear relationship between increasing oscillopsia intensity and worsening VA. This was supported by observations at lower intensity simulations but not at higher intensities, with incremental changes in VA gradually levelling off. A potential reason for the difference at higher intensities is the influence of frame rate when using digital simulations in virtual reality. Conclusions The frequency and amplitude were found to equally affect VA, as predicted. These results not only consolidate the assumption that VA degrades with oscillopsia but also provide quantitative information that relates these changes to amplitude and frequency of oscillopsia.
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This study determines the relation between visual field impairment, visual functioning, and global quality of life in patients with glaucoma. Binocular visual field impairment was calculated from simultaneous Esterman visual field testing using the Humphrey automated perimeter. Visual acuity impairment, defined with the American Medical Association's Guides to the Evaluation of Permanent Impairment; visual functioning, measured with the VF-14 and the field test version of the National Eye Institute-Visual Functioning Questionnaire; and global quality of life, assessed with the Medical Outcomes Study 36-Item Short Form Health Survey, were determined in 147 consecutive patients with glaucoma. None of the Medical Outcomes Study 36-Item Short Form Health Survey domains demonstrated more than a weak correlation with visual field impairment. The VF-14 scores were moderately correlated (r=-0.58). Of the National Eye Institute-Visual Functioning Questionnaire scales, peripheral vision (r=−0.60), distance activities (r=−0.56), and vision-specific dependency (r=−0.56) were moderately correlated with visual field impairment; vision-specific social functioning, near activities, vision-specific role difficulties, general vision, vision-specific mental health, color vision, and driving were modestly correlated with visual field impairment (r value between −0.32 and −0.55); visual pain was weakly correlated with visual field impairment; and general health and vision-specific expectations were not notably correlated with visual field impairment. Statistically adjusting for visual acuity weakened the correlations. The Medical Outcomes Study 36-Item Short Form Health Survey indicated that our patients with glaucoma were comparable with previously studied patients without severe systemic medical problems. However, the Medical Outcomes Study 36-Item Short Form Health Survey scores did not correlate with visual field impairment in our study. Based on the moderate correlation between binocular visual field impairment with the VF-14 and the National Eye Institute-Visual Functioning Questionnaire, these questionnaires may be useful among patients with glaucoma.
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To evaluate the responsiveness of 2 health-related quality-of-life (HRQOL) questionnaires, the Adult Strabismus-20 (AS-20) and National Eye Institute Visual Function Questionnaire-25 (VFQ-25), to changes in HRQOL after strabismus surgery. Cohort study. We included 106 adults (aged 18-84 years; median, 48.5) undergoing strabismus surgery, 80 (75%) with diplopia and 26 (25%) without diplopia. All participants completed AS-20 and VFQ-25 questionnaires preoperatively and a median of 7 weeks (range, 4-13) postoperatively. Using predefined clinical criteria, postoperative outcomes were graded as either "success" (n = 65), "partial success" (n = 32), or "failure" (n = 9). For each questionnaire, mean composite and subscale scores (range, 0-100; worst to best HRQOL) were calculated for each patient. Median change in scores pre- to postoperatively was compared for successes, partial successes, and failures, and the proportion of patients whose scores exceeded 95% limits of agreement was calculated. Successfully aligned diplopic patients (n = 46) showed greater improvement than failures (n = 7) using both the AS-20 questionnaire (21.3 [quartiles 12.5-35.0] vs. 8.8 [3.8-12.5]; P = 0.002) and the VFQ-25 questionnaire (18.3 [8.6-26.1] vs 8.3 [0.8-13.5]; P = 0.02). Successfully aligned nondiplopic patients (n = 19) also showed greater improvement than failures (n = 2; AS-20, 23.8 [10.0-32.5] vs -3.1 [-10.0 to 3.8]; P = 0.05). In nondiplopic patients, changes on VFQ-25 were small but significantly greater for successes than failures (5.0 [0.0-10.1] vs -15.4 [-19.4 to -11.4]; P = 0.03). More successfully aligned patients showed improvement exceeding the 95% limits of agreement for AS-20 scores than VFQ-25 scores (67% vs 65% [P = 0.8] for diplopic patients and 63% vs 21% [P = 0.005] for nondiplopic patients). The AS-20 and VFQ-25 questionnaires are responsive to improved HRQOL in adults undergoing successful strabismus surgery. Changes on VFQ-25 were smaller, particularly for nondiplopic strabismus. The AS-20 is more responsive than the VFQ-25 across the range of adult strabismus.
Article
Nystagmus consists of involuntary to and fro movements of the eyes. Although studies have shown that memantine and gabapentin can reduce acquired nystagmus, no drug treatment has been systematically investigated in congenital nystagmus. We performed a randomized, double-masked, placebo-controlled study investigating the effects of memantine and gabapentin on congenital nystagmus over a period of 56 days. The primary outcome measure was logarithmic minimum angle of resolution (logMAR) visual acuity; the secondary outcome measures were nystagmus intensity and foveation, subjective questionnaires about visual function (VF-14) and social function. Analyses were by intention to treat. Forty-eight patients were included in the study. One patient in the placebo group dropped out. Patients were randomized into either a memantine group (n=16), gabapentin group (n=16), or placebo group (n=15). Mean visual acuity improvements showed a significant effect between treatment groups (F=6.2; p=0.004, analysis of variance) with improvement in both memantine and gabapentin groups. Participants with afferent visual defects showed poorer improvements in visual acuity to medication than those with apparently normal visual systems. However, eye movement recordings showed that both nystagmus forms improved in nystagmus intensity (F=7.7; p=0.001) and foveation (F=8.7; p=0.0007). Participants subjectively reported an improvement in vision after memantine and gabapentin treatment more often than in the placebo group (p=0.03). However, there were no significant differences between the treatment groups with visual function (VF-14) or social function questionnaires because all groups reported improvements. Our findings show that pharmacological agents such as memantine and gabapentin can improve visual acuity, reduce nystagmus intensity, and improve foveation in congenital nystagmus.
Article
Nystagmus is an involuntary, to-and-fro movement of the eyes that can result in a reduction in visual acuity and oscillopsia. Mechanisms that cause nystagmus are better understood in some forms, such as acquired periodic alternating nystagmus, than in others, for example acquired pendular nystagmus, for which there is limited knowledge. Effective pharmacological treatment exists to reduce nystagmus, particularly in acquired nystagmus and, more recently, infantile nystagmus. However, as there are very few randomized controlled trials in the area, most pharmacological treatment options in nystagmus remain empirical.